Tag: Real Life

I can’t be left alone.

On By Katy DalyIn My Disability Truth4 Comments

Sometimes I forget that, because when disability is your normal you don’t feel disabled.

But when the person I live with came to me tonight and asked if it would be okay if they stayed somewhere overnight in a couple of months, I wanted to say sure, because I don’t want to stop them doing anything. But my first reaction was what do I do while you’re not here?

Now I’m lucky to have someone else that can come stay with me for the night, so that they can go and do what they want to do and I still won’t be alone. But it dawned on me then that means I can’t be alone. And as I write this, I really don’t know how to feel about that.

It’s like a reminder that I’m still disabled. And people who know me who aren’t disabled might find that odd because I am very obviously disabled and it doesn’t make sense that I would just forget. But I really don’t feel that way most of the time.

In many ways, disability can be a mindset. But this isn’t the positive mantra you think it is. It can lead to a disconnect between the body and the mind, that I’ve had trouble dealing with all my life. And can make the reality of realising I’m disabled, difficult to deal with at times.

Well at least you’re in the building.

On By Katy DalyIn Blog1 Comment

When was the last time you saw a live performance?

This is the prompt for today, but as I’ve answered it before it won’t let me answer it again. I’m at one now.

Getting into this building wasn’t easy for me, it was honestly testifying. It was something I can’t be sure I would have done if I knew what was expected of me from the start.

I was essentially pulled up several flights of stairs in my wheelchair, using an old but honestly good accessibility aid. I’ve included a picture of me using this below.

Image Description: A photo of myself in my electric wheelchair being pulled up stairs. My hands are gripped tightly on the armrest of the chair.

As this photo shows the whole experience was terrifying, and as I write this I have to go back down again.

Knowing the artist I’m here to see, I’m certain it was worth what it took to get me in here. But if I’m honest with myself I’m still upset by this whole experience. I shouldn’t have to go through this to have fun. Fun shouldn’t be this hard. Fun shouldn’t be hard.

The anxiety of this experience is going to leave me in more pain than usual for the next few days.

I’m torn between writing more about this now, while the emotions are fresh or focusing on the fact I’m about to here one of my favourite artists live.

I’m going to focus on the music for tonight.

I don’t really like holidays anymore

On By Katy DalyIn Blog, My Disability Truth, Writing PromptsLeave a comment

What is your favorite holiday? Why is it your favorite?

I used to love holidays.

But as I’ve grown up I’ve realised just how small my world seems to be compared to those around me. How many options they have to spend with other people that aren’t me, and how few options I have.

Holidays are difficult for me, not wanting to get in the way. Feeling like I’m around because people think that they have to have me around, rather than them wanting me around.

Part of me would just rather to be alone on me own for most holidays. But I can’t do that without the person I live with needing to be with me. So I’m kind of stuck going so they can go.

This is before we even get the fact that of the limited family members whose homes are accessible to me, none of them are easy for me to get in.

So I guess this one is a reminder that not everyone likes holidays. Holidays are not easy for everyone. So be kind.

If I tell you I’m not bothered by you doing something without me, I’m probably lying.

On By Katy DalyIn BlogLeave a comment

This time I definitely am. But telling the truth about this just seems selfish so I won’t.

It hurts honestly, when those close to me do things without considering me, even when I say it’s okay. I feel like I’m being left out, and sometimes that just really gets to me.

I know that living my life as a disabled person there is always going to be things I can’t do, there is always going to be things that aren’t accessible to me. If there wasn’t I wouldn’t be disabled. And part of me really wants to tell people that if I can’t do something they shouldn’t be doing it. But I understand how completely selfish that is so of course I wouldn’t do it. Of course I wouldn’t say I don’t want you to do that because I can’t. Why would I do that? But the truth is I really don’t want you to do some things because I can’t do it.

It makes me angry and upset, and quiet. I’m not really sure what more to say about this situation. I’m sorry that I’ve not said more. But I think I’m still angry, whether at myself or them I’m honestly not sure. I want to say I’ll write more later, but if you’ve read this blog for a while you know I would probably forget.

I’m also not having a shower tonight, and if I’m honest the definite reason behind that is because I do not want to get more in there way. I do not want to take time away from them having fun by showing, because that honestly just doesn’t seem fair to me.

Can you just.

On By Katy DalyIn My Disability TruthLeave a comment

You know all those little things that pop into your head to check when you’re trying to sleep in the middle of the night?

Well I can’t check them.

I can’t check where that charger I don’t really need is, or if the front door is locked. Or if one of the babies are doing something they shouldn’t be in the night.

But despite not being able to act on them, I definitely still get the thoughts. I still want to check the heating is turned off or if the front door is locked.

And again, I can’t check them.

When it’s at it’s worse every thought feels like nothing more than a reminder of the things I cannot do.

I just wished the thoughts matched my body. That my brain and the rest of me were on the same page, just once. It would really do me a favour if I no longer had the things that my brain stated to me at the moment which I’m not able to do them.

Fatigue sucks.

On By Katy DalyIn My Disability TruthLeave a comment

Fatigue is a big problem for me at the minute. And I did the thing you shouldn’t do and googled, it’s going to get worse.

It’s really hard to get the motivation to do thins when I just think hey I’d rather be asleep than do that. And if I do massage to catch it where my brain is on board, it always seems like my body is on a different page.

There are many reasons why it can seem that is my body that makes the world inaccessible to me, and this is just one of them. I have to push myself against my own body.

I’ve tried to regulate my sleeping pattern and even if I can do so for a while, it never seems to stick. Something always happens, I sleep to much or not enough for one day and it completely throws me off.

I’m going to really struggle this week. I have a big day this week where I’ll be travelling all day, and I can already tell I’m going to be exhausted for it. Afterwards though it should help my brain and my body to reset.

So I guess this one’s just to say bare with those of us who seem like we never sleep or sleep to much. We’re trying. It annoys me to.

Money.

On By Katy DalyIn BlogLeave a comment

So money is tight but I have got in very good at making it work by now.

Many people would say that as I am on benefits this is how it should be. Benefits are supposed to buy you the essentials and not keep you comfortable. Those in charge of the benefits system will tell you that this is an intentional setup to motivate people to get into work. But this doesn’t consider people who can’t just go out and look for work to improve their situation.

To prove a point to those who could get a job to provide their income, those of us who can’t are made to suffer.

I would love to work. I have tried to get into work. But an ableist society, or my disabilty, depending on how I’m feeling about myself in the moment, have made this incredibly difficult if not impossible for me to do.

Society doesn’t want disabled people to be included. An how we are judged for being on benefits is a prime example of this. If we are able to brake free from the box that they want us in, to get a job and make money. Most of our benefits are taken from us at a rate that isn’t really proportionate to the cost of living in the world.

The UK does allow us to keep one benefits as disabled people, even if we find employment. But this doesn’t cover the deficit of disability, the disability tax, the reality of being disabled.

Though I started writing this post a few days ago, in relates to the topic I choose to write about when fulfilling yesterdays writing prompt. You can read that here.

It focuses on a specific area of the disability tax, food. Food often costs more money when you’re disabled because of the type of food that is accessible to a disabled.

Often ready-made food is needed over the cheaper ingredients that can be bought by some to make the meal for yourself. For me, this plays out in a reliance on microwave meals and takeaways.

Money is more of a balancing act when you’re disabled. You’re only allowed a small amount of it before you’ll be penalised for having it. Yet the things you need, the help you need; a cleaner, ready-made food, taxis, to name a few that apply to me, cost more money.

It doesn’t really make sense when you think about it that way. But I’m sure many people will tell you that things cost more when you have less money. But it definitely has a different impact, and sometimes a bigger impact when you’re disabled.

I hate that my independence isn’t always affordable.

There’s something I love about takeaways food.

On By Katy DalyIn My Disability Truth, Writing PromptsLeave a comment

What is your favorite restaurant?

Takeaways can actually be an accessibility tool.

A lot of people see things that make doing something easy as promoting laziness, but this just isn’t the case. I don’t believe that laziness exists and if you can do something in a way that is easier for you, you absolutely should. As someone who can’t cook, takeaways are how I cook. They’re both how I get to decide my own food, and contribute to the cooking in the house.

For me takeaways are an accessibility tool, though I love takeaways, even though I can’t always afford to have them. This can be seen as part of what is called as the disability tax, that is the extra money disabled people pay to have to live in such an inaccessible society.

For me it’s either takeaways, microwave meals or very basic oven meals. As I can not cook at all, and the person I live with has limited ability to do so. While society will tell you it’s easier and cheaper to home cook a meal, it’s not always easier (or possible) so the cheaper option isn’t always an option.

It’s also worth remembering the other areas of inaccessibility I face, such as my wheelchair or reliance on carers, that mean I don’t often go out to eat at restaurants. If I’m out I will eat, but I don’t think I’ve ever gone out to eat apart from with friends and family. So I’m answering this question from the perspective of takeaways rather than restaurants specifically, if that wasn’t obvious before.

My favourite takeaway has to be Mcdonalds I think. I like to keep it simple. But I also love a good subway. Something like Indian or Chinese is saved for special occasions like birthdays.

Concert drama.

On By Katy DalyIn BlogLeave a comment

I know I’m lucky to have problems with going to concerts as a disabled person. As that means I’m in the position to both financially and physically to be able to try and figure out how to get myself to a concert. But in the accessible world that we live in this doesn’t make it easy.

One of the caveats of going to a concert if you are disabled person is too alert the venue that you will be going to that you are disabled. But this is not a straightforward as it seems.

There is often unlimited number of spaces for those in wheelchairs or with other disabilities. Sometimes, depending on the venue, this can actually make sense. But more often than not numbers are limited to make things easier for a venue. To ensure that they take a box in the best way for them, rather for concertgoers.

What really bothers me personally is the fact that venues will not allow myself to go in the general admission area when it is accessible to me. They simply say no. I am a health and safety risk.

They don’t actually care about my health and safety or anyone else’s health and safety. They simply do not want to get into trouble if someone were to hurt themselves on my wheelchair. Honestly, that feels like a them problem. But they insist on it making it a me problem.

This is even harder when I don’t feel disabled despite how disabled I may look. I don’t want to go in the special area. I’d rather be in the general admission area and not be able to see then be in the special area with a perfect view. I want the proper concert experience and I think that I deserve that. I don’t think it’s too much to ask for. Don’t even get me started on the special treatment that some disabled concert viewers believe they deserve. I’m not talking about the separate area. I understand why some people might need that. That’s why I think it should be an option, not a necessity. But someone interrupted perfect view, as if that is realistic of a concert. I’m not just really annoys me.

The process of getting accessibility arrangements for a concert can feel like you’re asking of venues permission to attend. Something that disabled would have to do.

For this reason and for the idIocracy of the system, I tried to stay out of the finer details of organising my access to concerts. I really hate it. I know that I’m going to get too angry at the whole thing and not be able to deal with it properly and sensibly.

Concerts are a polarised experience for me. They even make me feel completely included and part of society in a way I don’t feel anywhere else. or extremely disabled, very in the way as I don’t belong there at all. There seems to be no middle ground. And yet I keep going because I want the good experiences. I deserve the good experiences, I think.

As I write this post there is a chance I may not be able to go to an upcoming concert that I already have tickets and VIP meet and greet for. This is due to aforementioned bizarre system of accessibility. I’m honestly trying not to think about it because I really want to go to this concert. And I’ll be heartbroken if I can’t.

Anyone reading this that may think disabled people get things for free because of schemes like companion tickets. If you’d rather deal with the things I have to deal with in order to get the free tickets you’d be welcome. I would swap in heartbeat. I would trade all cheaper tickets I’ve ever ever got just to attend concerts as a normal person. I just want to sing and dance.